Ontario health

Join us on Twitter on January 25th, 2018 to raise awareness of Ontario’s young carers.

Young Carers Awareness Day is celebrated in the UK. For the first time, we are also recognizing this awareness day in Ontario. Join us on Twitter (@TheChangeFdn) using #YCAD to join the conversation. We invite young carers, young adult carers, organizations that support young carers, and anyone that is interested in seeing change in Ontario for young carers, to help create an online blitz that will create awareness and understanding of young carers in Ontario.

The Change Foundation and others will be sharing many stats and other information about young carers to bring the topic to the forefront for policy makers, influencers, elected officials and others. Re-tweet this content, or create your own to add to the online blitz.

Those are Emily’s words, but they may as well have been spoken by any of the 20 other young carers we had in the room at our recent Young Carers Forum, the first time in Ontario that young carers, researchers and policy makers were brought together to start planning a way forward for young carers.

As the caregiver conversation gains momentum in Ontario, it’s important for us to not allow our province’s half a million young carers to be left behind. Too often, this sub-population of family caregivers – which has its own issues and needs related to schooling and age and just being a kid – is forgotten.

“No one should ever have to make the choice between their family and their future,” said another young carer at the forum. He’s right—we’re asking too much of young carers without giving them anything in return.

The Forum was an opportunity to start changing that.

We wanted to hear directly from young carers, and we most certainly did. In fact, I think we all learned something valuable that day: Don’t underestimate young carers because of their age. These children and youth are wise beyond their years, and they will be the change they want to see in the world. We just need to listen.

And we did, and it was a privilege to hear these mature and articulate young carers tell their stories, and it was a privilege to hear their ideas for change. Theirs are stories that need to be told, and theirs are ideas that need to be implemented.

We can’t be cynical about this. We need to start with the knowledge that we weren’t wasting our time at the Forum. There are too many people listening—Ontario’s Premier Kathleen Wynne told us as much in a welcome video and Ontario’s Patient Ombudsman Christine Elliott attended the entire Forum, and even spent her lunch hour with the 20 young carers, hearing their stories in more detail. There are too many young carers who shared their experiences and who demand to be heard.

It’s time for change.

But what should that change look like? Here’s what we heard from the young carers at the forum:

We need to build awareness that young carers are everywhere. They should be recognized and valued. This is where we need to start.

We need more supports for young carers in the worlds of education, health care and social services, and they need to be available, reliable and consistent. In the words of young carer Emily, “don’t make me go find them.”

We need to create safe places for young carers, but we need to think about how to create these places and where. We need to realize we can’t just wave a magic wand and make something “safe.”

We need more programs for young carers. We heard from some of the programs that already exist in Ontario at the forum, and they’re mostly organizations with small budgets and large results.

Young carers need more resources. And by that, I mean money. Health care spending is directed at current priorities. We need to all work together to make young carers a provincial and national priority.

Collaboration is crucial here—young carer issues cross a variety of sectors: education, health care, social services, community care. We need an integrated approach. This will be a challenge because that’s not how government is used to functioning.

How do we get all this done? For me, that means listening to the words of 14-year old Abbigail, and her advice to young carers:

Don’t be afraid of telling people about your life

Talk to people you trust

Do things you normally enjoy to keep your self-esteem up

Stay true to yourself

Don’t let others bring you down

Let’s start there, and let’s keep moving this forward. We have a job to do to make young carers a priority now – and we need to grab some attention. So let’s go. This is just the beginning.

To quote a speaker at the forum: “This needs to spread like wildfire.”

It’s a good thing the meeting room at the Change Foundation has big windows, considering the rate at which Geoff Huggins was throwing accepted wisdom out of them during his recent visit. Huggins is director for health and social care integration in Scotland. He described his role as one of strategic and policy responsibility — but added “both of those are really quite outdated concepts.” So that was the first idea of how to bring about change that got tossed.

Scotland officially launched integrated health and social care with legislation that came into effect in April 2016. It created 32 “Integration Authorities,” (similar to LHIN sub-regions in Ontario) and put heavy emphasis on local action for local needs. (More detail on Scotland’s integrated approach to health and social care is available at: http://www.gov.scot/Topics/Health/Policy/Health-Social-Care-Integration)

Huggins told the meeting the move to integration was driven by the need to rethink a healthcare system that was unsustainable in the face of people living longer, even into very old age, often with chronic conditions.

Historically, he told us, Scotland would have taken a highly centralized approach to the issue.

“Our previous model was to publish guidance, to have budgets, to have projects…and to set targets, then expect the system, by doing all those things which we had centrally mandated, would produce benefits. That model doesn’t seem to be working.”

There went another piece of accepted wisdom out the window — that centralized policy and planning, firmly mandated from on high and carefully tracked and measured, is the essence of keeping healthcare sustainable.

Scotland is also bucking current thought on standardization. Where Ontario and most other jurisdictions strive to scale up good ideas and spread them, Huggins embraces variation. There is no guarantee that patients in each Integration Authority will get the same services as patients elsewhere; in a country with 300 per cent variation in hospitalization rates for seniors, one size will definitely not fit all.

Instead, Scotland set nine health and social care goals for the country, then asked each locality what it needed to achieve those goals, in the belief the government’s role is to remove barriers and enable change, not to dictate how goals are to be achieved. Each locality’s different mix of providers and population needs local solutions backed by government support.

Now, health officials are free to act locally — although not in isolation. “What we expect is that you know what everybody else is doing, how people are approaching the same problem, you know what the evidence base says, and you find the best solution for your area,” Huggins explained. “Whether it’s something somebody else has done, or something you build yourself, you then track it against outcomes and you evaluate it appropriately.”

It’s a big change for governments, Huggins said. They like holding on to power, telling people what to do and how to do it, because being in charge makes them look committed and effective, but it comes at a price.

“At the point where we become involved in being directive and controlling and monitoring, then we begin to suck the life out of people,” he said. “All of this reduces the ability of the system to do the things it needs to do. We have great people — we need to treat them as great people.”

Most healthcare systems try to control any change that occurs, so it was clearly energizing for Huggins’ audience to hear a high-up official of another country’s healthcare bureaucracy say categorically that relinquishing control and learning to support people making changes yields greater improvement than central planning.

In fact, when Huggins remarked “The role of government is to promote that capability and to support that system rather than to direct that system and tell it what it needs to do,” he was echoing the words of the speaker at the first meeting, Chris Ham, who said the goal of government and planning bodies in integrating healthcare should be “do no harm.”

There were other echoes as well. Both Ham and Huggins said integration must focus on people, not organizations. And both noted that integration requires surrendering power, and acting altruistically to put the patient or the team or the system ahead of the self, or the organization, or the professional silo.

It can be done — and according to Huggins works best on the front line. “At the point where you give teams of people the opportunity to work together and differently, they will generally find good and sensible things to do and our challenge is to be out of the way and not try to overly manage it.”

On November 20, 2017 we hosted our second Hot Talks on Health event focused on family caregivers. The event shined an important light on the often invisible population of young carers. We heard keynote commentary from the U.K. on the state of young carer supports, the journey to legislation recognizing the vital role of young carers, and how young carers are supported (or not) in the healthcare system. In addition, we heard the story of an Ontario young carer, as well as insights on the caregiver recognition and support movement in Ontario.

In 2015-16, we engaged with family caregivers, and health and community care providers across Ontario through our Caring Experience initiative, to understand the breadth and depth of caregiving in Ontario from both perspectives.

Family caregivers told us:

They want more formal recognition of, and respect for, their caregiving role, and in some cases, they want to be part of a circle of care.

They are concerned that they can’t access the information they need to support the person they are caring for.

That providers often told them that they couldn’t share health information for privacy reasons.

We also engaged with health care providers to understand what got in the way of their efforts to work effectively with family caregivers. These providers told us:

They were uncertain about privacy requirements.

They were unclear whether they had the legal right to speak with caregivers to collect personal health information.

They weren’t sure whether or when they are allowed to share personal health information with family caregivers.

It was clear that both caregivers and providers could benefit from a resource that would set the record straight about how Ontario’s privacy and consent rules apply to them. In this report, The Change Foundation set out to address these concerns by:

Summarizing what caregivers need to know about the legal frameworks in order to get the information they are entitled to in order to serve and support patients, as well as providers’ legal responsibilities about consent and disclosure; and

Describing how some common scenarios play out under Ontario’s privacy and consent legislation.

Shortly after their project focused webinar in late Fall 2017, our Embrace Changing CARE team acknowledged the need for an additional knowledge product tailored specifically to the questions that would help both caregivers and health care providers working within Ontario’s mental health and addictions system.

Webinar: Making Privacy and Consent Rules Work for Family Caregivers Webinar – March 8th, 2018

*all questions received during the webinar have been answered either in the webinar recording or the slide deck available for download above*

In March 2015, The Change Foundation released Should Money Come Into It? A Tool for Deciding Whether to Pay Patient-Engagement Participants.

Click to download report

In Fall 2017, in response to increased uptake and interest in the topic, the Foundation decided to “relaunch” this report, by releasing a newly redesigned Decision Tool and our 7 Things to Think About when Considering Compensation infographic. As patient engagement activities become more common and compensation is a question, these tools can help answer the question: Should patient and family-caregiver participants be paid?

You are free to adopt the tool as is, adapt it for your needs, or use it as a springboard to discussion. In the associated brief, straightforward paper, you will also find pros, cons and expert opinions on the philosophical and practical issues involved. A note about process: We developed the decision tool with input from our own key patient engagement group, the PANORAMA panel.

From our first tentative focus groups, through the hundreds of discussions with caregivers and providers in 2016, to the current engagement now being held with caregivers and providers in our Changing CARE teams, I am convinced we chose the right themes and path to advance this work in Ontario.

We kept all the conversations disease and caregiving situation “agnostic,” and we asked people to tell us what would make a better partnership between families and providers in serving those who are cared for in health and community services. We heard the same things back then as we hear now:

Caregivers want to be recognized for the important role they play, included in discussions and decisions about their family member and treated as a partner in their care.

Caregivers want to be asked how they are doing and what the system and its providers can do to facilitate their “work” of being a caregiver.

Caregivers want to have easy access to the knowledge, supports and training that are necessary for them to be the best caregivers they can be.

The Change Foundation is promoting the revolutionary idea that it is the job of the health care system to create the conditions and the culture for partnering with family caregivers. This is the experiment we are conducting with the Changing CARE projects we are supporting.

We believe we have found four partnerships that have the three key components to successful improvement: the will, the ideas and the execution of changes.

The Foundation has the privilege of providing resources to these four groups to support engagement, co-design, and implementation, which we and the Changing CARE teams believe will lead to significant positive changes in the provider-family caregiver partnership and interactions.

The observation that these themes remain universal in the engagement we have had, and are continuing to have, with caregivers and providers, is proof to me that we chose the right course. I am convinced that by supporting, highlighting, and teaching others about the work that caregivers and providers are doing together in teams in the Changing CARE projects, that we can make a difference in the experience that Ontario’s caregivers and providers have in partnering to support those receiving health care services.

There’s broad agreement that integrated healthcare serves patients better, eases the burden on caregivers and improves system accountability and efficiency. There are excellent examples of it in many countries and multiple efforts to create it here in Canada. Yet progress toward it remains frustratingly slow.

Our idea was to create a kind of learning lab: over the meetings, the same group of Ontario health-system leaders would hear from experts on how integration is developing in other countries. Their responses to the first discussion would shape the second, and the third would build on that. We’ll have more complete articles coming out about the discussions, but I wanted to share briefly the gist of our September meeting.

Chris Ham, chief executive of England’s King’s Fund think tank, was our guest speaker at the first session. He opened his remarks by showing a video the King’s Fund uses to illustrate the concept of integrated care. It’s a useful primer, but by now the concepts of integrated care are well known, without being well-used.

That failure to spread, according to Ham, is because the vast majority of attempts to integrate care go about it the wrong way. Successful integrated care, he said, is fundamentally about people and their families and carers—how we can best meet their needs and how we can give them the skills required to focus on relationships. Our efforts tend to flounder because we forget that, and focus our energies on institutions, professions and jurisdictions, as Ham illustrated in this slide:

It was easy to recognize the point Ham’s slide was illustrating: we’ve all been part of the strategizing and planning the column of technical challenges represents. Our efforts to integrate healthcare often, perhaps usually, boil down to debates over affordability and territory.

In a strongly centralized, government-controlled system, that’s no surprise. Healthcare is structured around budgets and institutions. But that is Ham’s point: it should be about people. People are not technical challenges. And that’s why successful integration shifts the focus to the second column, relational challenges.

That simple list was clearly revelatory for the people at the meeting. The idea that we need to focus on systems and collaboration to transform healthcare is not new, of course. What caught people’s attention was Ham’s firm belief that government needs to “stay out of the way” and let local groups draw on and build relationships in order to make care work for the people in their area. More specifically, government should create the right environment to allow local organizations to come up with the right solutions for them based on their populations, culture and resources.

Ham’s recipe for success, based on what he’s seen so far, suggests integrated care cannot be introduced in a system-wide, top-down way. The best efforts he knows start small scale, in neighbourhoods or communities, perhaps serving as many as 30,000 to 50,000 people. Small enough, in any case, that providers are used to working together, and building links among services is not too unwieldy.

Ham’s first example of that small-scale personal approach was the remarkable shift to integrated care in the English retirement area of Torbay. Change there was triggered by a failing grade given to the town’s social services system by government inspectors, he said, but the change itself was not dictated by government; rather, local healthcare providers, led by family doctors, got together to improve their patients’ lives.

He also described how the District Health Board for Canterbury, the region surrounding Christchurch on New Zealand’s South Island, undertook radical changes to its care services beginning in 2007, when demand on the system was mounting to the point where it looked unsustainable.

Key to that success, Ham said, was Canterbury’s close-knit community, where people already knew and trusted each other. But it was also about true and meaningful engagement of those who would have to implement the change at the frontlines. He believes real change cannot be dictated or transactional — it must be bottom up and developed at the person-to-person level. I’d add that it must also involve patients and caregivers to be meaningful, which is an aspect of engagement Ham admits has often been neglected.

Ham added a caution as he described these successful examples of integrated care. Because it depends on relationships and local community reality, he said, there is no single right way to do it, and one community’s successful model cannot simply be grafted onto another community. We should not look for shortcuts.

Often, it takes a spark — a burning platform – to make transformational change in our healthcare system. When there’s a lack of a major crisis or tragedy, there’s often the lack of wherewithal or ability to upend the status quo. So I wasn’t surprised to hear how concerns about a failing social services system was “the burning platform” to integrate health and social services in a small town in England.

It’s an expression you hear all the time when people get together to talk about improving healthcare. We need a burning platform, someone inevitably says, then we could get something done.

While it’s true a crisis often drives reform, it’s a pretty grim metaphor — do we really want to achieve better care in the future by having things spin out of control now? And what are we saying to people who are struggling with the system as it is when we imply regret that in Canada we can’t seem to manage anything worse than a smoulder?

Discussions often centre around what some Ontario organizations are doing to promote integrated care, or how badly the system is failing to deliver it for some patients. But the more I thought about it, the more I wondered whether it’s the right metaphor. We can debate whether Ontario has a burning platform in healthcare but the visual for me is different. I think what we have is a cracked foundation: somewhat hidden and getting worse.

The last decade of policy “reform” has focused on better integrated care across multiple access points – primary care, hospitals, home and community and long term care. No one is arguing we have achieved success yet. But, it’s clear the emphasis is on living longer at home and in the community, with proper support. This hasn’t completely arrived and the cracks are beginning to show, particularly as the load for basic care is shifting to families and friends – supported or not.

At The Change Foundation, we hear this again and again in speaking with caregivers and providers. Caregivers talk about increasing levels of stress and burnout and providers recognize people need support but don’t know how to access it and don’t have time to research local resources – if they exist.

The thing about a cracked foundation is that it’s easy to ignore even though the homeowner knows it’s there. You may choose to do nothing about it, but you know the house is crumbling. The floor sags, doors won’t close, lines creep across the walls, yet the house keeps standing. Until it doesn’t.

At the Change Foundation, we are working to change this. Four Changing Care teams are working directly with their family caregivers and their professional staff to fix that foundation. We are looking forward to showcasing their innovations. Some simple fixes perhaps but necessary repairs.

In the spring of 2017, I joined The Change Foundation as an intern. Although I had always had a passion for healthcare, and I had worked in the field before, I had never been involved in work focused on the experience of family caregivers.

Upon my arrival, I was tasked with creating a comprehensive list of the programs and services that exist in Ontario that support young carers. This inventory, which we hope will help guide young carers, their families and healthcare providers, is nearly complete, and we hope to have it released in November.

Here are some of the things I learned through the process of building this resource and speaking with leading organizations across Ontario:

All across Ontario, organizations are quietly and independently doing bits and pieces of work that have the potential to make a large and meaningful difference in the lives of young carers. Each organization I spoke with shared the unique work they are doing to support young carers. But they were often unaware of other organizations who are doing similar work or work that would complement theirs. It surprised me as I imagined the impact that they could make for young carers by simply being informed about each other’s work, and then of course by working together.

Ontario does not have a universal understanding and definition of young carer. After meeting with a few of The Foundation’s existing young carer partners, I turned to the internet to further my search. The results for ‘young carer support in Ontario’ were few, with only the organizations that we had already worked with showing up. But when I combined other relevant terms, such as sibling, child, youth, young adult, and caregiver, a slew of other organizations popped up. Although many programs and organizations were not specifically labeled as young carer supports, many were actually supporting this population. Without a universal definition and understanding, it is difficult to be on the same page in terms of how the work from each of our organizations can fit together to ultimately support young carers in the different ways they need. We cannot have a clear direction and create common goals if we do not agree on the problem we are trying to solve.

Most of the existing resources I found are in the Greater Toronto and Hamilton Area (GTHA). As with many other healthcare services, supports for the health and well-being of young carers are concentrated in GTHA, or other metropolitan areas like Ottawa and London. While many of these organizations open their doors to young carers coming from anywhere in Ontario, the reality is that these services and programs are likely out of reach for many young carers. This highlights just how crucial it is that we work together to build capacity and deliver meaningful programs and services to young carers wherever they are. Ultimately, given that nearly a quarter of Ontario’s youth aged 15 to 24 are in a caregiving role, there are simply not enough resources available.

Going through this process really opened my eyes to the knowledge gaps that exist when it comes to young carers. There’s a lot of work that needs to be done to create awareness of, and support for, all caregivers. I was proud to be a part of it at The Change Foundation. It’s also the driver behind the upcoming forum that The Change Foundation is hosting to tackle this issue head on, the first of its kind in Ontario.

If you know of an organization that works with young carers that we haven’t spoken to yet, or to learn more about the upcoming Young Carers Forum, please contact Catherine Monk-Saigal at cmonksaigal@changefoundation.com.

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WHAT’S BEING SAID

Stephane is a young caregiver who assists with caring for his younger brother. Don has been caring for his wife since her diagnosis with early onset Alzheimer’s 5 years ago.
Hear from Stephane & Don on what their #caregiving experiences have been like: bit.ly/2VuxJCKpic.twitter.com/FfZTG9IqkE

Have you registered for our upcoming webinar on Including Caregiver ID initiatives as part of Family Presence and Open Visiting Policies in Ontario?
The webinar takes place on June 6th from 12:30-1:30 p.m. Register here: bit.ly/2Wuto3qpic.twitter.com/UTo09kDe1y

While 64% of #caregivers surveyed said they were happy to step in and provide care, 18% felt intimidated by what was expected of them.
Learn more about how caregivers feel about caregiving in our Spotlight on Ontario's Caregivers report: bit.ly/2TrwMe8pic.twitter.com/dl3dwlX8MQ

'Family presence results in better patient outcomes, it is that simple."
Are you looking to implement family presence or open visiting policy in our healthcare setting? Hear from those who do and their experiences in our latest report: bit.ly/2Wuto3qpic.twitter.com/pYCMRCBVqq

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